Down Days

In my blog post Good News For Ralph, I expressed my relief that easily rectified vitamin deficiencies were the cause of his mental confusion and strange behavior. Seems that might have been overly optimistic.

Although I haven’t written extensively about it, over the past several weeks the disturbing behavioral patterns have intensified after what appeared to be a brief reprieve. In addition to short-term memory problems and an inability to recall how to do the simplest tasks like turning on the washer, Ralph has been exhibiting a strange olfactory phenomenon. His sense of smell is not only acute but malfunctioning. For example, the AXE products he once loved, he now complains smell bad and refuses to use. Recently when I picked him up at the movie theater, he reported that the theater smelled so bad he reported it to the manager. And he’s stated many times that he can’t stand the smell of his sheets.

Something is most definitely wrong and I fear it goes far beyond any lingering B12 vitamin deficiency. Worse, Ralph knows it too.

Today we shared a heart-breaking moment when I noticed he’d been crying and asked what was wrong — a typical occurrence of late, which usually results in protestations that he’s “fine”, no matter how patiently and persistently I try to pry it out of him. This afternoon was different. As I held him close he cried “I just want to be myself again”, “I want my life back” and “I want my memory back.” And the entire time it was killing me inside to know that he’s aware that something is terribly, awfully amiss. If there’s a downside to Ralph being such a high-functioning human who happens to have Down syndrome, it’s that he’s sharp enough to realize he may potentially have a very serious physiological problem.

Back in the day: Ralph and me engaging in one of our favorite childhood rituals.

The thought of this beautiful person having to endure such a horrific, mind-ravaging and debilitating disorder completely overwhelms me with sorrow and yes, anger. It’s not that I don’t have sympathy for “normal” people who become afflicted with Alzheimer’s; it’s just that when I look back upon everything Ralph has had to endure — from initially being written off by a misguided (to put it nicely) doctor to having to work harder to compensate for having an extra chromosome to losing his hair to alopecia at 17 — I’d like to think he’s paid his dues and deserves some sort of dignified end to his life. Not some inescapable nightmare that robs him of cherished memories, makes him feel all alone and obliterates his ability to recognize and take comfort in those who love him.

And yet, there’s a very real possibility that that is exactly what lies ahead.

We will know for sure next Tuesday when we take him to see a specialist. In the meantime, if you could keep Ralph — and the rest of us — in your prayers, I would really appreciate it. We’re going to need all the help we can get.

You and Ralph and your whole family will be in our prayers. Our daughter Faith will turn 5 in June, and like Ralph, she is extremely high functioning. The prospect of Alzheimer’s (extremely common in people with DS, more so than ever due to longer life spans for people with DS) keeps me awake at night even now at her very young age. As a Christian and a conservative, I simply give it to God and pray for the best, and do what I can to put action to the prayers. I just read your other post, “A Little Down Syndrome”, and Ralph is truly remarkable. I’ll be praying for him, and I’ll ask Faith to pray for him tonight when we pray at bedtime. She’s a true prayer warrior even at such a young age, so I’ll be confidently expecting a miracle.

God bless you, Faith and your entire family Chris, and thank you for taking the time to comment. These children truly are a blessing and the lives they touch can never be measured. You are right…turning it over to God is all we can do. Thank you for your prayers and support, and please thank Faith too!

Have they ruled out Celiac? That can cause some of the same problems. My daughter who is 16 with ds. She came down with Celiac and since the major diet change she is back to her old self. She had some of the same insights.
My prayers are with you.

I have to add to Dale’s comment above. My grandmother has dimentia and as we rummaged through old notes we discovered a link between her celiac and the timing of dimentia onset. There is research to support this. So we got her onto a gluten free diet in the nursing home and she has gone from being non-verbal to having some utterances and is engaged in PT, OT and speech to further improve her quality of life. Research shows the earlier is it caught the better chance for recovery from dimentia. A side note, my oldest son, Bryce, is 7 and has DS. Having seen my paternal grandfather suffer from Alzheimer’s, I too am worried for my son’s future. Good luck and prayers for your family.

This breaks my heart. Your precious brother is in my prayers. I have a son Jimmy with Ds. He is 25. He inspired me to become a special education teacher and to also adopt his three younger brothers (all with Ds) from Russia. They are such a blessing. Your brother has touched my heart and I will be praying for him and for your family.

Thank you so much for sharing your story — what an inspiration you are! I am sure your boys are a constant source of joy and fulfillment. It’s hard to describe to anyone who hasn’t known and loved someone with DS just how much happiness they bring to others with their affectionate and warm personalities and zest for life.

I really appreciate that you took the time to comment and that you’re praying for Ralph. On Tuesday afternoon, we’ll know more after Ralph’s doc appointment and will post an update. God bless you and your family!